If you are an avid reader of my blog, you know my story. You know what happened to me. You know some of the struggles I have faced over the last 9 months with this mysterious health issue that didn't seem to give me relief for a good amount of time and that I still struggle with sometimes. You also know I haven't been given a diagnosis (which I believe is the toughest part of this whole deal).
About 6 weeks ago I started to feel crummy again and thought to myself, "Is this ever going to end?" I reached out and found another general practitioner to see. I wanted a fresh slate or a second opinion if you will. I felt like maybe a new pair of eyes looking into my medical history and story would be able to pick out something that hadn't been thought of yet.
I went to Stillwater and went through another long visit, blood work and discussed options. I felt hopeful. I got a call immediately the following morning. My new doctor wanted me to have brain mapping done to help pin-point where my "short circuit" was happening in my head and to help understand why. I scheduled the appointment with United Hospital. My appointment day came and my sister, Shannon drove me to the cities. I wasn't going to be able to drive after the test so I took my most trusted person with me. After nearly 2 hours the tests were done and I was feeling a little out of sorts from it but overall I had a feeling a hope. I wanted this to be the test that would help me find answers.
I got my results within a couple of days. Drum role... I have low tone, pitch & frequency deafness in my right ear with little functional hearing at high tones. I already knew my hearing was pretty much gone on that side so that wasn't shocking to me. I was most interested in my brain mapping results instead of my audiology test. The ENT said the results of my test showed that my left vestibular system is functioning normal; however, my right vestibular system (inner ear) is completely dead and non-responsive. It just doesn't work anymore.
So...to help you understand what that means in layman's terms: the brain, central nervous system, eyes and vestibular systems all work together to keep you upright and balanced. Since my right side is dead, my brain, central nervous system and eyes are all sending messages to it but it isn't talking back anymore. This gets my brain all confused and makes me feel those sensations of vertigo, lightheadedness, loss of balance & control, near blacking out and blurred vision. Silly brain! Ha. Isn't great I can laugh about this now? It is pretty amazing how a small little part of you can play such a vital role in your everyday functioning. I encourage you to read more about the vestibular system and how it contributes to your balance & sense of spatial orientation.
You may be asking yourself, "Well, why is dead?" "What happened to make it that way." GOOD QUESTION! We don't really know. Isn't that a bummer? Ugh. My doctor has three reasons for why my vestibular system died on me. 1: it completely degenerated on it's own for an unknown reason. (I don't like this one...I'm a "need answers" kind of person) 2: I could have had a virus get into my right vestibular system that destroyed all the nerves. 3: There is a possibility I have multiple sclerosis(MS) but that is a very hard and tricky thing to diagnosis. I have accepted all three reasons and that has been important for me. I struggled a lot with questioning why it was happening and what was causing it. Since I have accepted those, I feel more like my old self. I know some days are going to be hard and I'm going to feel like crap but that's life. I know that my time on earth is short and I'm not going to let this one thing bring me down and overtake my thinking or way of life.
My doctor talked with me about vestibular rehabilitation therapy and the things I need to do to help my brain & central nervous system recalibrate itself to solely use my left vestibular system. I am working out and continually challenging myself. Running, rollerblading, biking & kayaking are working on my balance and helps me get stronger. There are lots of other things that I am doing that are helping me recover from the loss. As I continue to do those things, my symptoms should get better and there is hope that I will be completely symptom free someday. I will go in for check ups and hope it will get better. If new symptoms arrise (like they have... i.e. left quad muscle twitching & spasms) AND things get worse, I will go in for further evaluation and tests to explore other possible causes. I'm not going to think about that until I have to.
I will never give up. I will never back down. I stand strong.
peace & love
bj
No comments:
Post a Comment